What motivates informal caregivers of people with dementia (PWD): a qualitative study

Abstract

Background The burden of caring for People with Dementia (PWD) is heavy; identifying incentives that motivate them in providing care is essential in facilitating and optimizing care. This study aims to explore and describe these motivating factors. Methods We conducted this qualitative study between January 2016 and January 2017 in Isfahan, Iran. Data were extracted through in-depth, semi-structured interviews with 19 caregivers of PWD. These data were then examined through thematic content analysis. Results We identified four categories of psychological motives based on the caregivers' feedback and experience. These include 1) Moral-based motives, 2) Religious, and spiritual motives; 3) Financial motives, and 4) Wicked motives. Conclusions Our results revealed several aspects of caregivers' motives. They include moral, religious, and spiritual aspects; sharing housing accommodations, and the likelihood of inheriting a portion of the patient's assets based on unspoken rules and informal arrangements in the family, and wicked and immoral aspects. These findings can inform future efforts in enhancing the experiences of caregivers of PWD, and subsequently, the quality of care these patients receive. It further suggests that family members, members of a religious and spiritual organization, as well as social media, could play important roles in setting the stage.